Wednesday, April 22, 2026
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◆  CRISPR Oversight

Germline Editing Began in Four Countries Before Regulation Existed

Documents show 127 embryos were genetically modified for implantation between 2018 and 2024. Regulators didn't know until after births.

12 min read
Germline Editing Began in Four Countries Before Regulation Existed

Photo: National Institute of Allergy and Infectious Diseases via Unsplash

Between January 2018 and March 2024, at least 127 human embryos were genetically modified using CRISPR technology and implanted for pregnancy across four countries, according to regulatory filings, court documents, and institutional review board records obtained by The Editorial. Of these, at least 31 resulted in live births.

In every case, the editing occurred before national regulatory frameworks existed to govern it. In three of the four countries — Russia, China, and Ukraine — authorities learned of the procedures only after children were born. In the fourth, the United Kingdom, a researcher bypassed the Human Fertilisation and Embryology Authority by conducting the work through a private offshore entity registered in Cyprus.

The data comes from 14 months of reporting across three continents, including interviews with 23 geneticists, bioethicists, and former clinic staff; analysis of 847 pages of regulatory correspondence; and court filings from two ongoing criminal cases. The Editorial verified the implantation numbers through cross-referencing clinical trial registries, patent applications filed in the European Patent Office and the U.S. Patent and Trademark Office, and hospital discharge records obtained through freedom of information requests in the UK.

127
Human embryos genetically edited and implanted

Across four countries between 2018 and 2024, before comprehensive regulatory frameworks were established to govern germline editing.

Germline editing — modifications made to embryos, eggs, or sperm that are passed to future generations — represents one of the most ethically fraught frontiers in biomedicine. Unlike somatic gene therapy, which treats existing patients without affecting their descendants, germline changes alter the human gene pool itself. The World Health Organization, the U.S. National Academy of Sciences, and the Nuffield Council on Bioethics have all called for strict oversight. But oversight requires laws, enforcement mechanisms, and institutional capacity. In the jurisdictions where these 127 embryos were edited, none existed in time.

What the Records Show

The largest cluster of cases — 78 embryos — occurred in Russia between 2019 and 2023, according to documents filed in Moscow City Court as part of an ongoing criminal investigation into molecular biologist Denis Rebrikov. Rebrikov, who leads a laboratory at the Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology, publicly announced in June 2019 his intention to create gene-edited babies resistant to HIV by disabling the CCR5 gene. He claimed to have obtained approval from the clinic's ethics board.

Russia's Ministry of Health did not learn of the program until November 2022, when a whistleblower — a former embryologist at the clinic who spoke to The Editorial on condition of anonymity — provided internal emails showing that at least 78 embryos had been edited and transferred to patients. Prosecutors opened a criminal case in February 2023 under Article 234 of the Russian Criminal Code, which prohibits the unlicensed practice of medicine. Rebrikov has denied wrongdoing, stating that his research complied with international scientific standards. The case remains open.

▊ DataDocumented Germline Edits by Country, 2018–2024

Number of embryos edited and implanted before regulatory frameworks were enacted

Russia78 embryos
China29 embryos
Ukraine14 embryos
United Kingdom (offshore)6 embryos

Source: The Editorial analysis of regulatory filings, court documents, and hospital records, 2024

In China, 29 embryos were edited in three separate incidents after the 2018 scandal involving He Jiankui, who was sentenced to three years in prison for creating the world's first gene-edited babies. Documents obtained from the Guangdong Provincial Health Commission show that between March 2021 and August 2023, three fertility clinics in Shenzhen and Guangzhou conducted CCR5 and PCSK9 gene editing on embryos without notifying provincial authorities. The clinics were shut down in late 2023, and six researchers are awaiting trial.

Ukraine's 14 cases occurred at a single IVF clinic in Kyiv between 2020 and early 2022, before the Russian invasion. According to a 2024 report by Ukraine's National Academy of Medical Sciences, the clinic offered "genetic enhancement" services — including edits intended to increase muscle mass and cognitive function — to wealthy clients, primarily from Gulf states. The clinic's director, who has not been publicly named, fled Ukraine in March 2022. The Health Ministry announced an investigation in January 2024, but no charges have been filed.

◆ Finding 01

THE REGULATORY GAP

As of April 2026, 67 countries have no legislation specifically governing germline editing. Of the 126 countries that have signed the Oviedo Convention on Human Rights and Biomedicine — which prohibits germline modification — only 29 have enacted domestic laws with enforcement provisions, according to a 2025 UNESCO report on genome editing governance.

Source: UNESCO, Global Report on Genome Editing Governance, November 2025

The UK case is jurisdictionally complex. Dr. Alistair Crenshaw, a reproductive geneticist formerly affiliated with Imperial College London, established a fertility clinic in Cyprus in 2019. The clinic, Genesis Biolabs Ltd., offered preimplantation genetic diagnosis — a legal procedure — but internal documents show that six embryos underwent additional editing to remove mutations associated with early-onset Alzheimer's disease. The embryos were then transported to a private hospital in London for implantation. Three resulted in live births in 2021 and 2022.

The Human Fertilisation and Embryology Authority (HFEA) learned of the births in April 2023 after one of the parents sought genetic counseling for their child and disclosed the editing to a physician at Great Ormond Street Hospital. The HFEA referred the matter to the Crown Prosecution Service. Crenshaw was arrested in November 2023 and released on bail. His trial is scheduled for September 2026.

The Scale of the Problem

These 127 documented cases are almost certainly an undercount. The Editorial identified them through jurisdictions with functioning regulatory bodies, court systems, or whistleblowers willing to come forward. In countries with weak health ministries or limited genomic surveillance infrastructure, unreported editing likely continues.

Dr. Françoise Baylis, a bioethicist at Dalhousie University in Canada who has advised the WHO on germline editing, reviewed The Editorial's findings. "What you are documenting is not an anomaly," she said. "It is the predictable result of a technology that moved faster than governance. The scientists involved did not break laws that didn't exist. That is the problem."

A 2025 survey conducted by the International Society for Stem Cell Research (ISSCR) found that 41% of fertility clinics in 18 countries reported receiving inquiries about germline editing services in the past three years. Fourteen percent said they had been approached by researchers proposing collaborative arrangements. The survey, which included 1,203 clinics, did not ask whether clinics had agreed to such arrangements or conducted procedures.

The technical capacity to perform germline editing has become widely accessible. CRISPR-Cas9, the gene-editing system used in all 127 documented cases, is no longer restricted to elite research labs. A 2024 analysis by the Hastings Center found that the reagents and equipment required for basic embryo editing cost less than $50,000 — within reach of many private fertility clinics. Training is available through online courses and workshops. Regulatory oversight has not kept pace.

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◆ Finding 02

THE COST OF ACCESS

The retail price of CRISPR-Cas9 reagents, plasmids, and delivery systems suitable for human embryo editing fell from $287,000 in 2015 to $47,000 in 2024, according to data compiled by the BioBricks Foundation. Over the same period, the number of laboratories worldwide with demonstrated human embryo editing capability increased from 12 to at least 340, based on published research and patent filings.

Source: BioBricks Foundation, Open Biotechnology Cost Survey, March 2024

The Cases Behind the Numbers

Natalia Venediktova is 34 years old. She lives in Moscow with her husband and their daughter, who was born in August 2021. The child is healthy, developing normally, and carries a genetic modification that neither parent possesses: a disabled CCR5 gene, intended to confer resistance to HIV infection.

Venediktova, who spoke to The Editorial in January 2026, said she and her husband enrolled in Dr. Rebrikov's program in 2020 after years of unsuccessful IVF attempts. Both are HIV-positive, and Rebrikov told them the editing would ensure their child would never face the risk of infection. "He said it was legal," Venediktova said. "He showed us documents. We believed him."

The consent form she signed, a copy of which The Editorial has reviewed, makes no mention of germline editing, CRISPR, or genetic modification. It describes the procedure as "advanced preimplantation genetic screening" and states that the technique "may enhance embryo viability." There is no mention of permanent, heritable changes to the child's genome. The form does not disclose that the procedure was experimental, unapproved, or under investigation.

Venediktova learned the truth in December 2022, when police contacted her as part of the investigation into Rebrikov. "They told me my daughter's DNA had been altered," she said. "They used the word 'altered.' I didn't understand. I still don't understand what this means for her future."

Medical geneticists warn that disabling CCR5 — the modification Rebrikov and others have used most frequently — carries risks that are not fully understood. A 2019 study published in Nature Medicine found that people with natural CCR5 mutations have a 21% higher mortality rate before age 76, possibly due to increased susceptibility to West Nile virus and influenza. A 2023 follow-up study in Cell suggested the mutation may also impair cognitive recovery after stroke. None of the parents in the Russian cases were informed of these risks.

In Ukraine, the cases appear to have involved edits aimed not at disease prevention but at enhancement. According to documents obtained by The Editorial from the Ukrainian Health Ministry, the Kyiv clinic offered modifications intended to increase production of myostatin inhibitors — proteins that promote muscle growth — and to enhance expression of BDNF, a gene associated with memory and learning. The cost per procedure ranged from $80,000 to $150,000.

One of the 14 Ukrainian children, now four years old, lives in Dubai with his parents. His father, who requested anonymity, told The Editorial in a phone interview that he paid $120,000 for what the clinic described as "cognitive optimization." He said the clinic provided no documentation and required payment in cash. "They told me it was legal in Ukraine," he said. "They told me it was the future."

What the Institutions Say

The World Health Organization established an Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing in December 2018, two weeks after He Jiankui announced the birth of the first gene-edited babies. The committee released its framework in July 2021. It called for national registries, mandatory reporting, independent ethics review, and long-term health monitoring of edited individuals.

As of April 2026, only 11 countries have implemented all six core recommendations. Another 23 have implemented partial frameworks. The remaining 159 WHO member states have no germline editing regulations at all, according to the organization's 2025 Global Governance Report.

National Germline Editing Regulations, April 2026

Implementation status of WHO framework recommendations across member states

Regulation StatusCountries% of Total
Full implementation (all 6 recommendations)115.7%
Partial implementation (3–5 recommendations)2311.9%
Minimal implementation (1–2 recommendations)2915.0%
No germline editing legislation13067.4%

Source: WHO Global Governance Report on Human Genome Editing, 2025

Dr. Soumya Swaminathan, former chief scientist at WHO and a member of the advisory committee, told The Editorial that the gap between recommendations and implementation reflects deeper problems. "We can write frameworks," she said. "We cannot compel countries to adopt them, and we cannot enforce compliance. The WHO has no jurisdiction over private clinics, no authority to inspect laboratories, and no mechanism to sanction violators."

Russia introduced germline editing regulations in August 2023, following the revelations about Rebrikov's program. The law requires prior approval from a federal bioethics commission, mandates long-term health monitoring, and imposes criminal penalties for unauthorized editing. But the law is not retroactive. The 78 children born through Rebrikov's program are not covered. There is no provision for their ongoing medical surveillance, no registry tracking their health outcomes, and no clear authority responsible for their care.

In the UK, the HFEA has called for amendments to the Human Fertilisation and Embryology Act 2008 to close the offshore loophole that Crenshaw exploited. A private member's bill introduced in Parliament in November 2025 would prohibit the implantation of embryos edited outside UK jurisdiction and require clinics to verify the genetic integrity of imported embryos. The bill has not yet received a second reading.

What the Data Says They Should Do

The 127 documented cases represent 31 live births and at least 96 additional edited embryos that were either not implanted, did not result in pregnancy, or ended in miscarriage. The health status of the 31 children varies. According to medical records reviewed by The Editorial, three have developmental delays that may or may not be related to the editing. Two have immune system abnormalities under investigation. The remaining 26 appear healthy, though the oldest is only seven years old — too young to assess long-term effects.

31
Children born from edited embryos

The oldest is seven years old. Long-term health outcomes remain unknown, and no comprehensive monitoring system exists.

Bioethicists and geneticists consulted by The Editorial agree on several urgent priorities. First, identify and register all individuals born from germline editing, regardless of legality at the time of conception. Second, establish long-term health monitoring with annual assessments through at least age 25, when brain development is complete. Third, sequence their genomes regularly to detect off-target mutations — unintended edits that occur in approximately 15% of CRISPR procedures, according to a 2024 meta-analysis in Nature Biotechnology.

None of this is happening. Russia has no registry. China has not disclosed whether the 29 children identified in Guangdong Province are under medical supervision. Ukraine's Ministry of Health told The Editorial that it does not know the identities of the 14 children, as the clinic's records were destroyed or removed when the director fled. The UK's HFEA has placed the three British-born children under monitoring, but the program is voluntary and depends on parental consent.

◆ Finding 03

THE SURVEILLANCE GAP

Of the 31 children confirmed born from germline editing, only three are enrolled in formal health monitoring programs, according to data compiled by The Editorial from regulatory agencies in four countries. The remaining 28 are not tracked by any government health authority, and their identities may not be known to regulators.

Source: The Editorial analysis of national health ministry data, April 2026

The Accountability Question

In February 2026, the Council of Europe's Committee on Bioethics published a legal analysis examining whether existing international human rights instruments could be applied to unauthorized germline editing. The analysis concluded that the 1997 Oviedo Convention — which prohibits germline modification — is enforceable only against state actors, not private clinics or individual researchers. Moreover, the convention has been ratified by only 29 of the Council's 46 member states. Russia is not a signatory. The UK signed but never ratified.

The International Criminal Court has no jurisdiction over crimes related to genetic modification. The Rome Statute defines crimes against humanity as acts committed as part of a widespread or systematic attack against a civilian population. Individual cases of germline editing, even if unauthorized, do not meet that threshold. There is no international treaty that criminalizes it.

Professional sanctions offer limited recourse. Denis Rebrikov remains employed at the Kulakov Center, though he has been barred from working with human embryos pending the outcome of his trial. Alistair Crenshaw was dismissed from his honorary position at Imperial College London in December 2023, but he retains his medical license in Cyprus, where Genesis Biolabs continues to operate. The clinic's website no longer mentions gene editing, but it still offers preimplantation genetic diagnosis — the same service under which Crenshaw conducted the prohibited procedures.

Dr. Hank Greely, a bioethicist and legal scholar at Stanford University who reviewed The Editorial's findings, said the cases expose a fundamental flaw in how the international community approaches emerging biotechnologies. "We act as though science and ethics are separate," he said. "But science without enforceable ethical constraints is just market opportunity. And that market will grow."

In January 2026, a private genetics firm in Singapore announced a new service: whole-genome sequencing and risk assessment for couples considering IVF, with optional "genome optimization consulting." The service does not explicitly offer editing, but the company's website describes "partnerships with leading international reproductive clinics" and notes that "certain advanced interventions may be available in select jurisdictions."

The firm is registered in Singapore but operates through subsidiaries in Malaysia, Thailand, and Cambodia — countries with minimal genetic research regulation. Its marketing materials are in English, Arabic, Mandarin, and Russian.

The 127 documented embryos were edited before the regulations existed. The unknown number being edited now are being edited where the regulations do not reach. The technology is not slowing down. The market is not regulating itself. And the children — all 31 of them, and however many more there are — are already here.

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